suicide

The more worried I feel about expressing my views on a particular topic, the more interest a blog seems to generate.

I’ve written this in anticipation of the Mental Health Taskforce Report, finally due out next week. Although, I’m unsure what you’ll think, I feel the need to say some things I could not have said when I was doing my old job running mental health services.

Mental health services are undoubtedly scary. But they are not all the same. The atmosphere and standard of care even on different wards in the same hospital can vary widely. It depends on the expertise and most of all the compassion of the doctors, nurses and the people in charge. If you have had a poor experience of care, either as a patient or a family member, that is terrible. It is vital that we face the fact that 1 in 3 people say they experience stigma within services. The Time to Change project I’ve been chairing addresses this, with more to report later this month. But at the same time, we must do all we can not to terrify people who need treatment. The chances are they will receive care that will really help. And if they start out assuming the worst, it will be even harder for the staff working with them to establish a therapeutic relationship. And this is the most valuable treatment tool available. I know this from personal experience.

The standard and availability of care in mental health services also depends on the attitudes and expertise of those running and commissioning these services. There is a real and present danger that, faced with wicked choices of saving vast sums of money from the NHS, commissioners look to make savings which will cause the the least outcry, ie from mental health. This isn’t an opinion, by the way. It is a fact. In particular, they look at most expensive care, which happens to be in hospitals, and persuade themselves that the local population can do without most or even all of it. But they can’t. To try to “re-engineer” aka cut beds without careful testing and sustained investment in evidence-based alternatives is irresponsible and dangerous. And yet this is exactly what has been done and continues to be done all over the country right now. Lord Crisp’s report into the availability of acute mental hospital beds published yesterday laid the facts bare. It was a good start. And the access targets it proposes will help. But we still have a long battle to rid ourselves of stigma towards mental health services not only from society but also from the rest of the NHS.

Alcoholism and misuse of drugs are symptoms of mental distress and/or of underlying mental illness. To treat them simply as addictions is cruel and pointless. It may seem cheaper in the short term to separate such services from the NHS and employ unqualified staff to provide care. And it may be politically attractive to take a punitive, non-therapeutic approach to those who self medicate with alcohol or illegal drugs. But to do so condemns vulnerable people to a half life of pain and a premature, horrible death.

There are millions of treatments available for physical illnesses. The same is so for mental illnesses. But why is it that people think they have a right to comment on the treatment of others who are mentally ill in a way they would be unlikely to do for, say, diabetes or heart disease? It’s true that psychiatry and psychology are inexact sciences. This is why they take more expertise, humanity and humility than the other disciplines of medicine. So if you feel tempted to comment on someone else’s treatment, unless you are their trusted clinician, please don’t.

There is no hierarchy of mental illnesses, and no patients who are more “deserving” than others. People who experience psychosis don’t deserve more pity than those who have bipolar disorder, or vice versa. And a short bout of clinical depression can be just as fatal as anorexia nervosa. Please remember this and put away your judgements.

You can’t see mental illness. And that’s part of the cruelty. Getting up and going to a cheap cafe to spend the day with others who understand the challenges of mental illness might sound easy to you. If you feel inclined to bang on about the value of work to those for whom the thought of being compelled to attend a job interview causes them to seriously consider jumping under a train, please shut up. Just because some people don’t get sympathy from tabloid newspapers doesn’t make them any less of a human being than you.

I’ve no problem with the use of words like bravery to refer to those experiencing cancer. And I know from friends with cancer that they have no choice but to be brave. But can we please recognise the courage, guts and determination of those who experience life with mental illness? And can we stop talking about suffering, because it implies passivity and weakness. The one thing I know about every person I have ever met who lives with a mental illness is that they are anything but weak. They are creative and heroic, in ways those who’ve never faced a life such as theirs can only imagine.

People who live with mental illness should be applauded and lionized. Not criticised, preached at, commented on, misunderstood and shunned. I hope next week’s taskforce report will recognise this.

Books that have inspired me this year by @Suzypuss @jamestitcombe and @molly_speaks

To keep depression at bay, it helps to count one’s blessings. My Twitter friends are a very big blessing. Here are some thank you messages for 2015:

To campaigning journalists @andymcnicoll and @shaunlintern for supporting underdogs including mental health care and people with learning disabilities. Please never stop.

To Adam and Zoe Bojelian who lost their dear son @Adsthepoet in March 2015 but keep his legacy alive via Twitter. You are in our thoughts as you face a first Christmas without your wise, beautiful boy. We will never forget him and what he taught us.

To @JamesTitcombe who lost his baby son and has courageously campaigned for greater openness over mistakes in the NHS, despite some vile online abuse. I treasure my copy of Joshua’s Story. And I thank James for all he continues to do to make the NHS safer for patients and their families.

To all who bravely act as patient representatives, such as the indomitable @allyc375, and remind regulators, commissioners, managers and clinicians what the NHS is actually for. Only they know the cost of speaking up. Go Ally, @anyadei @ianmcallaghan @DavidGilbert43 and others who’ve earned the right to call themselves patient leaders.

And to @HSJEditor for taking a risk and running the first HSJ list of patient leaders. Thank you Alastair. I think it was a game-changer.

To those who’ve grasped one of the most feared conditions and are making life better for those living with it. I mean you, @dementiaboy and @dr_shibley. To you and others like you, thank you for refusing to leave dementia in the too-difficult box.

To @Liz_ORiordan who is generously sharing her experiences of breast cancer care, which for a breast surgeon is a pretty massive deal. And for some other stuff.

To @EastLondonGroup, who introduced many of us to a group of previously little known landscape artists from the early 20th Century. Sunday Morning, Farringdon Road has become a landmark of my week.

And to @penny_thompson, for pointing me to ELG and for always being true to her values.

To poet @Molly_speaks for painting pictures with words in her lovely new book Underneath the Roses Where I Remembered Everything

To @HPIAndyCowper, for his excoriating, original analysis of the NHS, and for his support to me in my scribblings.

To @clare_horton for running the excellent @GuardianHealthCare and even including some of my pieces. This meant so much.

To @seacolestatue @EAnionwu @trevorsterl @thebestjoan @pauljebb1 @joan_myers and many others for plugging away in the face of seemingly impossible odds. The Mary Seacole Statue will rise in 2016 as a permanent memorial to someone who showed how, if something matters enough, we should never give up.

To @nhschangeday @PollyannaJones @helenbevan dani_ellie @jez_tong @LydiaBenedetta @cjohnson1903 @WhoseShoes @fwmaternitykhft @DaniG4 @damian_roland and so many others for including me in NHS Change Day 2015. I was meant to be helping you but I gained many times more than I gave.

To @TimetoChange @suebakerTTC @paulfarmermind @carolinewild @danbeale1 @2gethertrust @NTWNHS @rethink @mindcharity and a whole raft more for being a major part of my life this year, working together to tackle the stigma that still exists within the NHS towards folk who, like me, experience mental illness from time to time but are so much more than our diagnoses. Here’s to you.

To @nurse_w_glasses @anniecoops @drkimholt @gourmetpenguin @AlysColeKing @DrUmeshPrabhu who show by words AND actions that compassion is alive and kicking amongst health professionals

To wonderful women leaders such as @SamanthaJNHS @BCHBoss @JackieDanielNHS @ClaireCNWL @CharlotteAugst @KMiddletonCSP @Crouchendtiger7 @DrG_NHS @VictoriBleazard @JaneMCummings @CarolineLucas @juliamanning @TriciaHart26 @clarercgp who stick their heads above the parapet and make the world a better place

And folk like @NHSConfed_RobW @ChrisCEOHopson @cmo @profchrisham @ProfLAppleby @WesselyS @nhs_dean @NHSE_Paul @ScottDurairaj @stephen_thornton @jhazan @rogerkline who prove that leaders on Twitter don’t have to be women to be fabulous

To bright, bubbly new leaders like @anna_babic and all those I’ve met via @NHSLeadership, who fill me with hope for the future. And to @Alannobbs @kirsti79 @NoshinaKiani and all the other great folk at the NHS Leadership Academy. You do stunning work.

To @GrassrootsSP and everyone who works to prevent the long shadow cast by suicide. Thank you.

To everyone who supported me in my bike ride for @samaritans in the summer. Especially @NurseEiri and @JackieSmith_nmc. They know why.

To @Suzypuss whose book The Other Side of Silence has inspired me to get on and finish mine.

To wise owls @johnwalsh88 @TelfordCC @KathEvans2 @gracenglorydan @timmkeogh @RecoveryLetters @profsarahcowley for being beacons when the world feels a bit too hard

To friends who also experience mental illness from time to time and who share their thoughts and feelings so generously. Thank you @BipolarBlogger @Sectioned @BATKAT88 @annedraya @clareallen @corstejo @schizoaffected @rabbitsoup_zola and many, many others. On a not-so-good day, yours are the tweets I look out for. You bring me hope.

If I could, I would add everyone else I’ve chatted with on Twitter this year. To everyone I follow and who follows me: Twitter is 97.5% good for my mental health, and that’s because of all of you. Thank you all so much. I wish you all much love for 2016. You rock :😎💃❤

Last night, I glanced through a well-written Guardian Healthcare piece about the distress experienced by a psychologist over the death by suicide of a patient. It touched a nerve deep in me, and I tweeted this:

Those who rush to judge mental health staff should read this honest piece. In my exp, every loss is as keenly felthttps://t.co/WGM0S2lALL

It got 15 retweets, 9 likes, some positive comments from people who work in mental health services but also a few more questioning ones from people who I would describe as experts by experience. And it was these, plus my initial reaction to the article, that have had me thinking rather hard over the past 24 hours.

I want to make some unequivocal apologies:

I am sorry for my initial tweet. It is sadly not true that all such deaths are so keenly felt. Many are, but by no means all. I desperately wish they all were.

I apologise to all those staff at the mental health trust I once ran who experienced the death by suicide of a patient and who didn’t get the support they needed to help them cope with such a loss or learn valuable lessons that would help them and other patients in the future. Despite my sincere wishes otherwise, I wasn’t always as consistently effective as I intended to be in this regard. I am so sorry for this.

The people I was referring to who “rush to judgement” and look for people to blame after a death by suicide are NOT people who have experienced care, good or poor, or their families. In my not inconsiderable experience, such people are often the most moderate, thoughtful and compassionate towards the staff. Those who DO rush to judgement are some, not all, of the media; some, not all, politicians; and a tiny but vociferous minority of the general public. It can nevertheless feel overwhelming to be under such an onslaught. I have experience of this. But I should have made what I tweeted clearer. I am really sorry that I didn’t, because I upset and hurt people whose feelings matter very much to me. I may have done so inadvertently, but I was careless. And I am truly sorry.

This stuff is particularly painful to me because of my own experiences many years ago when I made an attempt at suicide. What the nurse in A and E said to me, that I was selfish and a waste of space and keeping him away from patients who were really ill, had a deep and lasting impact. It took many years before I confronted my shameful secret and quite a few more before I came to accept that he had been wrong. So I am especially sorry that my tweet wasn’t well-constructed. Of all people, I should know better.

It was after I returned to work in 2014 after my worst-ever depressive breakdown that I fully confronted the reality that staff who work in mental health are not all as compassionate as we might hope. There are many wonderful people, but there is still some downright cruelty, some poor attitudes and practices and some not inconsiderable compassion fatigue. I have written about this and my contribution to changing things here and about how challenging it is here. Today, we had a really good, honest project working group meeting, which I chair. This is extraordinarily difficult stuff. It cuts to the heart of things that matter deeply to me and to all the others around the table. So I am especially sorry about my tweet. As a writer, I should be more precise and thoughtful. As a chair, I have responsibilities. As a human, I should have taken more care.

I thought about just deleting the tweet. But that won’t make what happened go away. An unequivocal apology seems a better response. That, plus continuing the work with Time to Change to tackle what we know from countless surveys to be true, that stigma and discrimination are still alive and kicking within mental health services. And if we allow ourselves or anyone else to go la-la-la-la-We’re-not-listening, we, indeed I, are/am complicit in letting it continue.

You will be hearing more on this from me and others in due course. Our work will, I hope, feature in the upcoming Mental Health Taskforce report and in the future work plans for Time to Change.

The death of anyone by suicide casts a long and painful shadow. It is right and to be expected that staff should feel distressed. But they also need compassionate support so they are able, eventually, to carry on being compassionate themselves. And the ones who can’t be compassionate need to be helped to find something else to do.

One of my big lessons in life has been that I can’t be truly compassionate towards others if I am not compassionate towards myself. This means forgiving myself for making mistakes. I hope the people who I carelessly hurt by my tweet will forgive me too. Eventually.

PS In fact, within a couple of hours of posting this I had heard from all those mentioned. I feel deeply blessed to know such kind and forgiving people :):):)

Surely a self-confessed mental health campaigner like me ought to be pleased about all this increased profile? Actually I feel three things:

Frustration

I feel frustrated and very angry for my fellow patients and erstwhile colleagues because of the cuts in care, both statutory and voluntary, that have led to the only “safe” place for people who are very unwell being in hospital, and to every acute mental hospital bed being full. It is not only cruel for the patients, it is deeply counter-productive. The young woman with a personality disorder languishing in an acute ward in North London (whilst funders slowly cogitate whether she should get a more appropriate service) is deteriorating daily and her problems are becoming ever more intractable and corrosive. If she had cancer, people would be doing marathons and having cake sales to support her. As it is, millions of people like her are seen by society only for their deficits rather than the assets that may lie buried deeply but are undoubtedly there. Parity of esteem? We’re having a laugh.

Love and gratitude

I feel huge love and gratitude to brave people like Professor Green for dragging mental illness and the stigma of suicide kicking and screaming out of the shadows and into the sunshine. I was moved by so much in Suicide and Me , including the rawness and vulnerability of the rugby coach as he bared his psychological all about feelings of worthlessness and what he is learning to do to protect himself from suicidal thoughts.

Today, the day after the programme was shown, I have a regular Board meeting with Grassroots, the small but highly effective suicide prevention charity of which I am a trustee. I love my fellow trustees and the amazing people who work and volunteer for Grassroots. We know what Professor Green has discovered for himself: suicide thrives where there is secrecy and shame. One of my shameful secrets used to be all those times in my life when I faked physical illness because I couldn’t get out of bed for feeling so hopeless, helpless and full of self-hatred that I wanted to stop living. It’s still very hard to ask for help, but many times easier now that I’ve outed myself. Bringing these shameful secrets into the sunlight and talking about them is our greatest tool to keep ourselves safe and to live a full and beautiful life in recovery.

Responsibility

I listened to All in the Mind this morning on iPlayer as it clashed with Suicide and Me. I salute the wonderful Claudia Hammond for dedicating her first programme of this series to young people’s mental health. I’ve written before about my concern that there is a lalala-I’m-not-listening response to the considerable increase in demand for children and young people’s mental health services. The programme takes a forensic interest in trying to find the reasons for this rise. There are various theories, mainly societal and social, but no conclusive explanation that could be used to stem the demand.

For staff working in these services, there is great anxiety – that they will miss someone extremely vulnerable, that the treatment they are giving is not sufficient, that they are spreading care and themselves too thinly. The pressure can feel close to unbearable.

We should be indebted to those who speak up about the challenge of working in mental health these days, like those on All in the Mind and the staff and leaders at Barnet Enfield and Haringey Trust on Panorama. Their courage and compassion shine.

These programmes stir up triggering thoughts and feelings in those who are susceptible. Social media can be a great source of support, but only if you are open, which also increases vulnerability. Twitter and Facebook have been very active this week.

I’ve had many thoughts myself. And I’ve come to a decision. I have more to give. I’m going to look for new ways to continue to tackle the stigma that affects not only those of us who experience mental illness, but also the availability and capacity of services to be able to tackle problems early with effectiveness and kindness. Watch this space.

And in the meantime, here’s to everyone who does what they need to do to keep on keeping on.

Saturday 22 August 2015, lunchtime. I’m looking forward to football – Brighton and Hove Albion v Blackburn Rovers. We got back from holiday last night. Steve has gone to Storrington via the A27 near Shoreham Airport to collect William from his cattery. They should have been home an hour ago. I notice via Twitter that there has been an incident at the air show affecting the A27. Slight anxiety till husband and cat return.

At 2.15 I set off on my bike to the Amex. The air is warm and still, the roads empty. At the stadium, we learn that kick – off will be delayed as the A27 at Lancing is shut both ways. Several thousand spectators fail to arrive. We win, not especially well. People keep checking their phones for news.The atmosphere is muted. Son, 28, hugs me spontaneously.

It is only the next day, as estimates of the number who may have been killed keep rising that the enormity of that Saturday moment really begins to sink in.

As I go about my Sunday, I think of those anxiously awaiting news. The names of two 23 year olds are released as the first to have lost their lives.They were semi-pro footballers at Worthing United, en route to a match in Loxwood. One was an Albion employee, both were Albion fans. Tony Bloom, our chairman, loses his composure as he pays tribute to two lovely boys. There will be many mothers like me feeling guilty for being thankful we have no-one missing.

Monday 24 August. On the Today programme, John Humphrys allows his exasperation at the dissembling of an aviation authority representative to get the better of him. He refers to the German Wings incident and talks of “Mad people getting into the cockpit”. A gratuitous, stigmatising link. I recall an appearance myself on Today earlier this year to challenge the German Wings coverage.

A planned day out with a friend to celebrate our 60th birthdays starts with an exhibition at the Imperial War Museum. The poignancy of the loss of young lives catches me unawares.

Much later on my way home, I check the BBC website. There are now six named dead or missing, at least five more to come. The A27 will remain closed all week. The West Sussex Coroner calls for patience; the scene of devastation is beyond comprehension, and identifying the bodies is painstaking work.

Tuesday 25 August. The national media has moved on. But Radio Sussex and our local paper The Argus continue to dedicate much space to the incident. The reporting is beautiful in its sensitivity and as far from sensationalist as you could hope. Careful attention is paid to those already known to be lost, those waiting for news, the ones involved in the clear up and local people who are just shocked and stunned. MP Tim Loughton does what leaders should in times of crisis and is present, calm and thoughtful in his comments. The police, ambulance, fire and rescue teams and volunteer helpers are heroic. The NHS is doing what it does best, saving lives, or trying to. News of the pilot isn’t good but people pray for him. There is no finger pointing. But there are understandable queries about whether vintage planes should be used in air displays over built up areas. The Shoreham Airshow as we know it may be no more.

We all have mental health. Events such as these don’t cause mental illness. But they affect our wellbeing in many ways. It’s wonderful to see Sussex Partnership and the rest of the NHS offering advice and help to those who need it.

And I’m pleased to see my friend Daniel from Brighton, Hove and District Samaritans speaking about voluntary support, including Samaritan volunteers who have been making themselves available to talk to distressed folk paying tribute to the dead. I can think of no-one better placed in such circumstances.

Thursday 29 August. This morning, two days after posting the original version of this blog, I get a call from Radio Sussex. They are doing a programme on Saturday lunchtime live from Shoreham Footbridge to pay tribute to all those who have died, been hurt, have helped in the clear-up or been otherwise affected in any way. Presenter Neil Pringle has suggested they ask me to appear in the programme. I couldn’t be more honoured. I will do my best to say things that will help people.

These are troubling times. Sussex has been dealt a body blow. How can we all help one another? By standing together, being patient, thankful, hopeful, and relentlessly kind.

Suicide is one of the last taboos. So much so, that some internet service providers (ISPs) block websites that name it, for fear they are pro-suicide or that just mentioning the word may somehow encourage it. Even my little blogsite has been affected. Thanks to those who told me about two ISPs who were blocking me, and to BT who fixed it fast. And thumbs up to Virgin Media whose initial excuses were unimpressive, but who sorted it out eventually.

I was thinking of the taboo of suicide when I met some wonderful people in Devon recently. Some had been directly affected by suicide, such as the couple who lost their 18 year old son in 2011 and now campaign to raise awareness, and promote a young people’s helpline and two excellent training courses, Safe Talk and ASIST via suicide prevention charity Papyrus. Some were like me and experience suicidal thoughts from time to time. And some were just good, kind people who help others in their chosen careers or as volunteers. They are all part of the South West Suicide Prevention Collaborative.

I shared some of my personal story with them and why I believe now more than ever that preventing suicide is everyone’s business. It is definitely not just the responsibility of staff who work in mental services, who can get blamed for not keeping someone alive, rather than praised for all the times that they have. Staff need support at such times because they feel devastated at the loss of a patient who they care about deeply. How can we expect them to be compassionate to others if we treat them with so little compassion?

Actually, this applies to all of us. Telling people who work in public services to be more compassionate while treating them without dignity, respect or kindness is the ultimate irony. And yet it is played out in many places every day. Including much of the media.

I said something at the event that isn’t currently fashionable. I don’t think it is is possible to prevent every death by suicide. But I do think that we can do very much more IF we make suicide prevention the business of families, friends, neighbours, schools, workplaces, all public services rather than just the obvious ones, the media, shops, cafes, bars, the voluntary sector, faith groups, social groups, sports clubs…everyone. And if we talk about it with more understanding and less rush to judgement, I believe we will gradually lose the taboo. But we still have far to go.

It isn’t just those of us who experience mental illness who think about killing ourselves. Death of a loved one, job loss, other sorts of loss, crippling debt, loneliness, isolation or an overwhelming sense of hopelessness about the future can all be causes. One of the people at the Devon conference spoke bravely about the corrosive impact of the downturn and benefit changes on those who are least well-off.

Only those who have been directly touched by suicide can possibly know just how raw and awful it feels. It is a grief like no other, because of the guilt and the shame that is still associated with it. I don’t get cross about those who still describe the act as “committing” suicide. They usually mean no harm. Suicide hasn’t been a crime since 1961, but we have some way to go to incorporate that change into our values, attitudes, behaviours and language.

I have spent a lot of my life being ashamed of having occasional suicidal thoughts. I was lucky to learn about Samaritans via an article in Reader’s Digest when I was 15, the same year I saw my first psychiatrist. Their kind, wise volunteers have helped me several times in the past. I even became one myself for a while in my early 20s. But I was going through a rough patch and left without explaining why.

Now it’s payback time. I’m doing a big bike ride to raise money for Samaritans. Apart from a handful of staff at their HQ, all Samaritans are volunteers. Like the two lovely women who spoke at the Devon event about the work they are doing in local schools to raise awareness and offer support in the event of a death by suicide. I am donating my £500 fee from the event this week towards my fundraising target. Every penny I raise will go to keep local branches across the country running and to pay for the calls desperate people need to make. I have a big birthday in August. I’m asking my family and friends to make donations in lieu of presents. I can’t think of a better way to celebrate reaching 60.

We can all help one another. That man sitting on the station platform all alone? How long has he been there? Could you get over your reluctance to appear interfering and take a moment to ask him how he is? What about the elderly neighbour whose partner has recently died and who hasn’t been seen for a while? The young person at work who takes frequent days off? The friend who has been made redundant? Even the chief executive who has apparently made a mistake and is getting a mauling via social media. We can all do our bit to be kind, because that is all it might take to save a life.

And as we say at Grassroots, the wonderful suicide prevention charity in Sussex of which I am a trustee, here’s to life.